Posts filed under 'sci'
Another exciting day. I awoke this morning and realized that my calf muscles actually look and feel almost normal. The right one more so that the left one. The accupuncture in my right arm seems to be having some effect as I have much less tingling and numbness now. Pain is still with me overall but it seems more managable.
I met Jon an his father at physio and made plans to join them and a few others for dinner. They are both incredibly nice men who seem very dedicated to this project. He also wants to do some filming for the CBC documentary. In my room this afternoon, while showing him my leg movement, my left leg accidentally slipped off the side of the bed. With cameras rolling, I shocked everyone including myself, when i actually lifted my left leg up and over the right leg, clearing it by a good 3-4 inches. I was in such shock that the only thing I could think to do was throw my leg off the bed again and see if I could successfully repeat the movement. Success again. 
At dinner, I discussed with Jon the idea of stepping the treatment program up to include a 6th injection. The next one will be an IV an should help deal with some general issues like pain. We also agreed to do a bone marrow culture of my own stem cells. This will become the 6th injection and will be mixed with the cord blood stem cells. We also discussed the addition of lithium chloride to boost the entire effect.
I am very excited and more than pleased with the results to date.
November 15th, 2006
I was finally able to get my phone cards working today so it was nice to make some calls and get in touch with friends. I am still having a lot of difficulty getting on line most days so everyone was happy to hear from me.
I noticed I am sweating behind my knees now. I am not really sure if this is new or not as I never really thought to check it. I have learned that this is an important sign so though I should document it. I have also noticed that I am hungry all the time now. We went to the local hotel for dinner tonight, had an impressive meal complete with a tea pouring ceremony. After selecting our tea, they set a little wooden box with a baby tea set on it. We had a hostess continually making and pouring the fresh hot tea into tiny thimble size tea cups. It was very interesting to watch and I have decided I want to buy one of these sets to take home. Now the problem will be who will make and pour it for my guests and I at home……..ha ha
I had my second stem cell injection today. I awoke with a very slight headache but nothing compared to what some experience. I also woke up at 10 pm, unlike the first time where I slept for 9 hours.
They are working me pretty hard in physio these days so am very tired at days end. I am on my hands and knees doing push-ups. They want me to try doing it with just one hand. I think they have watched Syvlester Stallone in Rocky do this one too many times and I keep asking my therapist to try doing it himself. They also have me on my knees with one of those large exercise balls in front of me. The idea here is to hold my balance and move the ball slightly. This not only works my lumbar muscles but helps with my overall balance. I have one of these balls at home so will work it into my daily work out when I return.
I also had an MRI this morning and am waiting on the results. Other tests that have been done are an electical stimulation for muscle response as well as euro dynamics. This is designed to see how much the bladder can hold before releasing. Both of these tests will be repeated before I leave to see if there are any changes.
November 15th, 2006
I had my second injection today. I had a slight headache upon waking at 10 pm but nothing major. It went away after a few hours. They have me working pretty hard at physio these days so I am pretty tired by days end. I had an MRI this morning and am waiting on the results to learn whether or not I will have surgery.
November 14th, 2006
I spent the day quietly resting in bed as instructed. I’m feeling fine but no miracles noted.
Sunday I was up early, went out for breakfast then returned to my room to get dressed for my first day of shopping. I was shocked to discover that I had therapy instead. My schedule said it was a free day. I pee’d on the toilet differently that before. I was able to get my bladder to release but not able to completely empty. I also noticed I am sweating behind the knees, don’t know if that is new or not. I am hungry all the time now. We went to the local hotel for dinner and had an impressive meal complete with tea pouring ceremony.
November 11th, 2006
I woke after a restful 8 hours sleep. I feel I should document the fact that the first real change I have noticed so far is that I don’t seem to need my usual 12 hours sleep I have been logging since the accident. I don’t know if this is just a coincidence or if it is a permanent change but I will monitor this. What a blessing it would be to return to the usual 7-8 hours sleep most require as opposed to having to devote half my life to sleeping now.
I was collected early this morning for a euro-dynamics appointment. That basically translates into how much urine can my bladder hold before it lets go with a flood. The appointment went well with the exception of the usual issues of language barriers. I had a difficult time getting them to understand that I do not feel “the urge” to go nor can I control the flow either starting or stopping. The concept of catheterization as required (also known as “in and outs”) seems to be foreign to them.
Today, I will get my first round of stem cells. I was told that was to be at 3 pm so by 4:30, when I was still sitting in my room, I was getting a little anxious. It was not that I was nervous about the whole thing, more so I was a little on edge thinking something had perhaps gone wrong and it would not end up happening after all. They finally collected me at 5 pm, whew. I learned that the “time for treatment” means more that it will occur sometime after that. The patients are sort of lined up and treated one after the other as opposed to having a specific appointment. One more learning curve I have gone down. The trip down the hall to the surgery was an adventure in it’s self. Could they bump and bang into any more walls and doors if they tried? The workers here are all very kind and considerate but I don’t think they have any idea how the jostling to and fro sends waves of pain shooting down my back. I was then left to sit out in the hall with the instructions “Please wait here”. OK, let’s see. I’m paralized from the waist down, laying on a gurney with no wheelchair in sight. Where did they thing I was going to go?
The nurse in surgery inserted an IV of a valium type substance. I was told to expect a “prick” like sensation. It was more like a searing hot poker being driven up my arm. After that, I was out cold until 3 am. I woke up feeling great, no sign of the headache some patients have spoken of. My hand, where the IV was inserted, is horribly swollen and bruised. I do plan on mentioning this to someone as I feel that this could easily have been managed by just injecting slower. Just my humble opinion though.
November 10th, 2006
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